Achieving optimal delivery of follow-up care for prostate cancer survivors: improving patient outcomes

Figures & data

Figure 1 Diagram of study selection for review inclusion.

Notes: Articles that were excluded could be classified in multiple categories; therefore, the sum of the categories of articles excluded exceeds the total N.

Table 1 Articles retained for their patient-reported measures related to prostate cancer follow-up care (N=29)

Study number	Citation reference	Study design	Prostate cancer focused	Prostate cancer nested within other populations	Patient-reported outcomes
1	Fowler et al^Citation41	National population based (n=1,072)	×	√	American Urological Association Symptom Index (storage and urinary symptoms) Decisional regret (single item) General Health Index (GHI) Mental Health Index (MHI-5) Patient Ratings of Significance of Sexual Complications Patient Ratings of Significance of Urinary Complications Satisfaction with treatment choice (single item)
2	Sanson-Fisher et al^Citation65	Survey study (n=888) Clinic-based study	×	√	Supportive Care Needs Survey (SCNS)
3	Pirl et al^Citation68	Survey study (n=45) Clinic-based study	√	×	Beck Depression Inventory (BDI) Fatigue Severity Scale (FSS) Karnofsky Performance Scale (KPS) Structured Clinical Interview for DSM-IV (SCID, modules for major depression and dysthymia)
4	Raina et al^Citation47	Survey study (n=86)	√	×	Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS)
		Clinic-based study			International Index of Erectile Function (IIEF-15) Patient satisfaction with erectile dysfunction treatment (2 items)
5	Raina et al^Citation58	Survey study (n=91)	√	×	Cleveland Clinic Post Prostatectomy Questionnaire
		Clinic-based study			Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS) International Index of Erectile Function (IIEF-15) Patient satisfaction with erectile dysfunction treatment (two items) Sexual Health Inventory for Men (SHIM)
6	Zakowski et al^Citation69	Survey (n=82)	×	√	Emotional Expressivity Scale (EES)
		Clinic-based study			Impact of Events Scale (IES) Profile of Mood States (POMS) Social Constraints (15 items)
7	Johnson et al^Citation44	Population-based cohort study: Prostate Cancer Outcomes Study (n=2,075) Survey study	√	×	Expanded Prostate Cancer Index Composite (EPIC-26); five items adapted on urinary function (single item) and bother (single item) and sexual function and bother (three items)
8	Raina et al^Citation57	Survey (n=49)	√	×	Cleveland Clinic Post Prostatectomy Questionnaire
		Clinic-based study			International Index of Erectile Function (IIEF-15) Sexual Health Inventory for Men (SHIM)
9	Miller et al^Citation48	Prospective cohort (N=709)	√	×	Expanded Prostate Cancer Index Composite (EPIC-26)
		Survey study			RAND Corp Medical Outcomes Study
		Clinic-based study			Short Form-12 (SF-12)
10	Eakin et al^Citation43	Population-based cohort study: Australian National Health Survey (n=5,808 age- and sex-matched controls; n=968 prostate cancer cases)	×	√	Kessler Psychological Distress Scale
		Survey study			Number of Days out of role (single item) Quality of life (single item) Self-reported health (single item)
11	Burnet et al^Citation49	Cross-sectional survey study (n=764) Clinic-based study	√	×	Hospital Anxiety and Depression Scale (HADS)
12	Northouse et al^Citation37	Randomized controlled trial (n=263 patient-spouse dyads)	√	×	Appraisal of Illness/Caregiving Scales
		Survey study			Beck Hopelessness Scale (20 items)
		Clinic-based study			Spouse Expanded Prostate Cancer Index Composite (S-EPIC) Expanded Prostate Cancer Index Composite (EPIC) Functional Assessment of Cancer Therapy – General (FACT-G) Functional Assessment of Cancer Therapy – Prostate (FACT-P) Lewis Mutuality and Interpersonal Sensitivity Scale Lewis Self-efficacy Scale Mishel Uncertainty in Illness Scale Omega Screening Questionnaire for distress Personal Resources Questionnaire Symptom Scale of the Omega Screening Questionnaire
13	Northouse et al^Citation38	Randomized controlled trial (n=263 patient-spouse dyads)	√	×	Appraisal of Illness/Caregiving Scales
		Survey study			Beck Hopelessness Scale
		Clinic-based study			Brief Coping Orientations to Problems Experienced Scale Expanded Prostate Cancer Index Composite (EPIC) Functional Assessment of Cancer Therapy – General (FACT-G) Functional Assessment of Cancer Therapy – Prostate (FACT-P) Lewis Cancer Self-efficacy Scale Lewis Mutuality and Interpersonal Sensitivity Scale Medical Outcomes Study Short Form-12 (SF-12) Mishel Uncertainty in Illness Scale Omega Screening Questionnaire for distress Symptom Scale of the Omega Screening Questionnaire
14	McInnes et al^Citation46	Cross-sectional survey study (n=778); American Cancer Society’s Study of Cancer Survivors-II (SCS-II)	×	√	Barriers to cancer information (author developed; three items)
		State cancer registry			Consumer Assessment of Healthcare Providers and Systems Quality of cancer information (author developed; five items) Medical Outcomes Study Short Form-36 (SF-36) Rating of overall clinical care (single item)
15	Schroeck et al^Citation53	Cross-sectional survey study (n=400)	√	×	Decisional regret (single item)
		Clinic-based study			Satisfaction with treatment choice (single item)
16	Chen et al^Citation40	Cross-sectional survey study (n=409); State cancer registry	√	×	Prostate Cancer Symptom Indices (PCSI)
17	Gacci et al^Citation54	Cross-sectional survey study (n=367) Clinic-based study	√	×	UCLA Prostate Cancer Index (PCI)
18	Gore et al^Citation55	Cross-sectional survey study (n=475)	√	×	American Urological Association Symptom Index (AUASI)
		Clinic-based study			Medical Outcomes Study Short Form-36 (SF-36) UCLA Prostate Cancer Index (PCI)
19	Mols et al^Citation60	Cross-sectional survey study (n=403)	×	√	Quality of Life – Cancer Survivors (QOL-CS scale)
		Dutch cancer registry			Medical Outcomes Study Short Form-36 (SF-36)
		Population-based study			Work situation (author developed; single item)
20	Roeloffzen et al^Citation56	Prospective cohort study (n=127)	√	×	American Urological Association (AUA) symptom index
		Survey study			European Organization for Research and Treatment of Cancer core Questionnaire (EORTC QLQ-C30)
		Clinic-based study			European Organization for Research and Treatment of Cancer prostate cancer module (EORTC QLQ-PR25) International Prostate Symptom Score (IPSS) Medical Outcomes Study Short Form-36 (SF-36)
21	Linsky et al^Citation45	Cross-sectional, study (n=19,867); population-based cohort Massachusetts BRFSS	×	√	Behavioral Risk Factor Surveillance System (BRFSS) survey items on: alcohol use (single item), physical activity (single item), and tobacco use (2 items)
22	Demark-Wahnefried et al^Citation59	Randomized controlled trial (n=641)	×	√	24-Hour Dietary Intake (Healthy Eating Index 2005)
		Survey study			Community Health Activities Model Program for Seniors questionnaire for Physical Activity
		Multinational study with participants from the US, UK, and Canada			Late-Life Function and Disability Index (Basic and Advanced Lower Extremity Function subscales only) Medical Outcomes Study Short Form-36 (SF-36)
23	Avery et al^Citation50	Prospective cohort study (n=3,935) Clinic-based study in the UK	√	×	Food frequency questionnaire (FFQ) (114 items)
24	Harden et al^Citation36	Survey study (n=95 female spouses)	√	×	Appraisal of Caregiving Scale (ACS)
		Community-based study			Caregiver Quality of Life Index – Cancer (CQOLC) scale Dyadic Adjustment Scale (DAS-4) Medical Outcomes Study Short-Form-12 (SF-12) Omega Screening Questionnaire Sexual satisfaction scale (SSS) (author developed, 3 items) Spouse Expanded Prostate Cancer Index Composite (S-EPIC)
25	Harden et al^Citation39	Survey study (n=121 partners)	√	×	Appraisal of Caregiving Scale (ACS)
		Clinic-based study			Caregiver Quality of Life Index – Cancer (CQOLC) Dyadic Adjustment Scale (DAS-4) Medical Outcomes Study Short-Form (SF-12) Omega Screening Questionnaire Sexual satisfaction scale (SSS) (author developed) Spouse Expanded Prostate Cancer Index Composite (S-EPIC)
26	Resnick et al^Citation24	Prostate Cancer Outcomes Study (n=1,655)	√	×	Bowel function and bother (author adapted from EPIC-26 used in prior studies)^Citation41,Citation61,Citation63
		Population-based cohort			Bowel urgency (single item) Bowel bother (single item)
27	Darwish-Yassine et al^Citation42	Cross-sectional, population-based cohort study (n=2,499); Michigan Cancer Registry	√	×	Expanded Prostate Cancer Index Composite (EPIC-26)
		Population-based cohort			Informational Sources (author developed) Preventive care receipt
28	Reeve et al^Citation51	Prospective survey study (n=697)	√	×	ICED comorbidity score
		Clinic-based study			Prostate Cancer Symptom Indices (PCSI) Medical Outcomes Study Short Form-36 (SF-36) Medical Outcomes Study Short Form-12 (SF-12)
29	Santa Mina et al^Citation52	Retrospective cohort survey study (n=509)	√	×	Godin–Shephard Leisure Time Exercise Questionnaire (GLTEQ)
		Clinic based study			International Index of Erectile Function (IIEF) International Prostate Symptom Score (IPSS) Patient-Oriented Prostate Utility Scale (PORPUS)

Note: √ denotes presence, while × denotes absence.

Table 2 Identified patient-reported measures related to prostate cancer follow-up care (n=68 discrete measures)

Physical health

European Organization for Research and Treatment of Cancer core Questionnaire (EORTC QLQ-30; physical subscale; three symptom scales – nausea, vomiting, fatigue, and pain; six single-item scales – dyspnea, insomnia, appetite loss, constipation, diarrhea, and financial difficulties)^Citation56

European Organization for Research and Treatment of Cancer prostate cancer module (EORTC QLQ-PR25) (treatment-related symptoms)^Citation56

Expanded Prostate Cancer Index Composite (hormonal symptoms scale; eleven items)^Citation37,Citation42,Citation53,Citation61

Expanded Prostate Cancer Index Composite-26 (hormonal symptoms scale domain; four items)^Citation24

Fatigue Severity Scale (FSS)^Citation68

“For how many days in the past 30 days was your physical health not good?” (single item)^Citation45

Functional Assessment of Cancer Therapy – General (27 items; FACT-G)^Citation37

General Health Index (GHI; three items)^Citation41

Karnofsky Performance Scale (KPS)^Citation68

Late-Life Function and Disability Index (basic and advanced lower extremities scales)^Citation59

Medical Outcomes Study Short Form (SF-12; physical functioning subscale six items)^Citation36,Citation37,Citation39,Citation48,Citation51

Medical Outcomes Study Short Form (SF-36; physical functioning subscale, ten items; bodily pain, two items; energy/fatigue, four items; general health perceptions, six items)^Citation46,Citation51,Citation55,Citation59

Medical Outcomes Study-36 (SF-36; Dutch version)^Citation60

Number of days out of role in past 2 weeks (single item)^Citation43

Omega Screening Questionnaire/Risk for Distress Scale (health history scale)^Citation36,Citation39

Patient Oriented Prostate Utility Scales (PORPUS; pain, energy, relationship with doctor)^Citation52

Quality of Life – Cancer Survivors (QOL-CS, Dutch version; physical well-being scale; eight items)^Citation60,Citation70

RAND-36 generic health survey (physical role restriction; physical problems; general health, two items)^Citation56

Self-reported health (single item)^Citation43

Supportive Care Needs Survey (SCNS; 59 items in across five domains: physical and daily living)^Citation65

Quality of life

General

“Can you think of any additional ways that being treated for prostate cancer has affected your quality of life?” (single item)^Citation71

European Organization for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-30; a global QOL scale)^Citation56

Functional Assessment of Cancer Therapy – Prostate (FACT-P)^Citation37

Medical Outcomes Study 12-item Short Form (SF-12)^Citation36,Citation37,Citation39,Citation48,Citation51

Medical Outcomes Study Short Form (SF-36)^Citation46,Citation51,Citation55,Citation59

Medical Outcomes Study-36 (SF-36; Dutch version)^Citation60

Patient Oriented Prostate Utility Scales (PORPUS)^Citation52

Quality of Life (single item)^Citation43

Quality of Life – Cancer Survivors (QOL-CS, Dutch version; 44 items; overall quality of life scale)^Citation60

RAND-36^Citation56

Urinary/bowel

American Urological Association Symptom Index (storage and urinary symptoms)^Citation55,Citation56,Citation64

European Organization for Research and Treatment of Cancer prostate cancer module (EORTC QLQ-PR25; urinary symptoms/problems, bowel symptoms/problems)^Citation56

Expanded Prostate Cancer Index Composite (urinary, 12 items; bowel, 14 items)^Citation37,Citation42,Citation61

Expanded Prostate Cancer Index Composite-26 (scales: urinary irritative-obstructive, urinary incontinence, bowel; 15 items)^Citation24,Citation44,Citation48,Citation62

International Prostate Symptom Score (IPSS; seven items)^Citation52,Citation56

Patient Oriented Prostate Utility Scales (PORPUS) (urinary frequency, incontinence, bowel function)^Citation52

Patient Ratings of Significance of Urinary Complications (number of items unspecified)^Citation41

Prostate Cancer Symptom Indices (PCSI; indices: bowel problems, urinary incontinence, urinary obstruction/irritation; item number not specified)^Citation40,Citation51

UCLA Prostate Cancer Index (urinary function/bother, 6 items; bowel function/bother, 5 items)^Citation24,Citation54,Citation55,Citation63

Sexuality

Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS)^Citation47,Citation58

European Organization for Research and Treatment of Cancer prostate cancer module (EORTC QLQ-PR25; sexual functioning; sexual bother)^Citation56

Expanded Prostate Cancer Index Composite (sexual function/bother, 13 items)^Citation37,Citation42,Citation61

Expanded Prostate Cancer Index Composite-26 (six items)^Citation24,Citation44,*

International Index of Erectile Function (IIEF-15)^Citation47,Citation52,Citation57,Citation58

Patient Oriented Prostate Utility Scales (PORPUS; sexual function and desire)^Citation52

Patient Ratings of Significance of Sexual Complications (number of items unspecified)^Citation41

Patient satisfaction with Erectile Dysfunction Treatment (two items)^Citation58

Prostate Cancer Symptom Indices (PCSI; sexual dysfunction index)^Citation40,Citation51

Supportive Care Needs Survey (SCNS; 59 items in across five domains: sexuality)^Citation65

Sexual Health Inventory for Men (SHIM) (five-item abridged version of IIEF-15)^Citation47,Citation57,Citation58

Sexual satisfaction scale (SSS; three items, author developed)^Citation36,Citation39

UCLA Prostate Cancer Index (sexual function/bother, nine items)^Citation54,Citation55,Citation63,*

Mental health/emotional/social well-being

Appraisal of Illness Scale (27 items)^Citation37

Beck Depression Inventory (BDI)^Citation68

Beck Hopelessness Scale (20 items)^Citation37

Brief Coping Orientations to Problems Experience Scale (28 items)^Citation37

Emotional Expressivity Scale (EES; 17 items)^Citation69

Hospital Anxiety and Depression Scale (HADS; 14 items; anxiety, seven items; depression, seven items)^Citation49

Impact of Events Scale (IES)^Citation69

Kessler Psychological Distress Scale^Citation43

Lewis Cancer Self-efficacy Scale^Citation37

Medical Outcomes Study Short Form (SF-12) (emotional well-being, six items)^Citation37,Citation48

Medical Outcomes Study Short Form (SF-36)^Citation55 (social functioning, two items; emotional well-being, five items; role limitations – emotional, five items)^Citation46,Citation55

Mental Health Index (MHI-5; five items psychological well-being)^Citation41

Mishel Uncertainty in Illness Scale (28 items)^Citation37

Patient Oriented Prostate Utility Scales (PORPUS; psychosocial and social well-being)^Citation52

Profile of Mood States (POMS; 17 items)^Citation69

Quality of Life – Cancer Survivors (QOL-CS, Dutch version; 18-item psychological well-being scale; ten-item social well-being scale; eight-item spiritual well-being)^Citation60

RAND-36 generic health survey (scales: social role restriction; emotional problems; well-being)^Citation56

Risk for Distress (inventory of current concerns; 16-item symptom scale)^Citation37,Citation39

Social Constraints (15 items)^Citation69

Structured Clinical Interview for DSM-IV (SCID, modules for major depression and dysthymia)^Citation68

Supportive Care Needs Survey (SCNS; 59 items in across five domains: psychological)^Citation65

Work situation (single item, author developed)^Citation60

Couples

Appraisal of Caregiving Scale (27 items)^Citation37

Appraisal of Caregiving Scale, modified (ACS; nine items)^Citation36,Citation39

Caregiver Quality of Life Index (CQOLC; 35 items)^Citation36,Citation39

Cleveland Clinic Post Prostatectomy Questionnaire (sexual satisfaction of spouses/partners)^Citation47,Citation57

Dyadic Adjustment Scale (DAS-4; couples satisfaction, four items)^Citation36,Citation39

Lewis Mutuality and Interpersonal Sensitivity Scale (32 items)^Citation37

Spousal/partner sexual satisfaction^Citation58

Spouse Expanded Prostate Cancer Index Composite (S-EPIC, spouses perception of bother PCa symptoms, six items)^Citation36,Citation37,Citation39

Health promotion

24-Hour recall dietary intake (unannounced; using Nutrition Data System for research Software)^Citation59

Alcohol use (30-day recall)^Citation45

Community Health Activities Model Program for Seniors Questionnaire (physical activity)^Citation59

Food Frequency Questionnaire (114 items)^Citation50

Godin–Shephard Leisure Time Exercise Questionnaire (GLTEQ; physical activity scale; three items)

Healthy Eating Index 2005 (dietary quality)^Citation59

Physical Inactivity (Behavioral Risk Factor Surveillance System [BRFSS], single item)^Citation45

Tobacco use (Behavioral Risk Factor Surveillance System [BRFSS], two items)^Citation45

Patient-reported care quality outcomes

Consumer Assessment of Health Providers and Systems (six items adapted)^Citation46

Decisional regret (author developed; single item)^Citation41,Citation53

Informational sources (items not described)^Citation42

Overall rating of Clinical Cancer Care (single-item)^Citation46

Perceptions about the Quality of Cancer Information (informational quality, five items; barriers to cancer information, three items)^Citation46

Ratings of physician: communication, provision of emotional support, shared decision-making, being informed about patients care, spending time to answer questions, providing instructions to manage side effects (number of items not specified)

Receipt of preventative care (diagnostic tests for PSA and DRE for follow-up)^Citation42

Satisfaction with treatment choice (satisfaction with treatment; single item)^Citation41,Citation53

Supportive Care Needs Survey (SCNS; 59 items in across five domains: health system and information; patient care and support)^Citation65

Notes:

* Adaptations of these instruments were used in Resnick et al and Johnson et al.^24,44 In Johnson et al,⁴⁴ for each domain (urinary, sexual, and bowel function), there were four to five questions about level of functioning and a single item about how much each symptom was problematic.

Abbreviations: QOL, quality of life; PSA, prostate-specific antigen; PCa, prostate cancer; DRE, digital rectal exam.

Figure 2 Recommended components of follow-up care for prostate cancer survivors.

Notes: Items in solid boxes are addressed by measures reported in this paper. Dotted lines are criteria not well addressed in the current literature.

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